What Can We Learn From a Human-Rights Based Approach to Disability for Public and Patient Involvement in Research?
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Public and Patient Involvement can align both the research process and its outcomes with the values, needs and expectations of society. By fostering the design of inclusive, engaged, and sustainable practices, research and research integrity can be improved. Devolving power to involve patients and relevant publics in deliberative decision making can produce better research outcomes. Disabled people are often categorized as “Hard to Reach.” There is a varied and complex ecosystem of societal challenges of living with a disability that reinforce this. However, if researchers are to meet their obligations under the UN Convention on the Rights of Persons with Disabilities, disabled people should be included in public and patient involvement for all research in which they have a stake. In this article we argue that a better understanding of rights-based approaches and the social model of disability within the wider research community can help to remove barriers to research involvement for disabled persons. We focus on articles 3, 4, and 9 of the Convention and discuss how the principles of participation, accessibility, and equality of opportunity can be applied to research involvement, and how their adoption can facilitate truly meaningful PPI in disability research.

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Social Model of Disability

The social model of disability views the social, civic, political, and economic environments as the disabling entity, not an individual’s impairment. A social model perspective does not deny the reality of impairment nor its impact on the individual. However, it does challenge the physical, attitudinal, communication and social environment to accommodate impairment as an expected incident of human diversity. The social model frames “disability” as the result of the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers.

Disabled people are not “objects” of charity, medical treatment, and social protection but “subjects” with rights, capable of claiming those rights, able to make decisions for their own lives based on their free and informed consent and be active members of society. The emphasis is on the physical, attitudinal, communication and social environment to change to enable people living with impairments to participate in society on an equal basis with others.

In line with the social model, we use the term “disabled person” throughout this article. We acknowledge that the CRPD and some others use the term of people or persons with disabilities.